Ten Years Later

Building a new kind of family

Life goes on, with no respect for the agony of living. For three years I stood on the tracks, that freight train loaded with tragedy rumbling toward me. There were long moments of hope, and many deep dives into denial, but the train kept rolling slowly down the line. I could not step off to safety, there was no way to avoid the reality that I would eventually be mowed down and left to try and find my way out from under the train wreck that had become my life. Nothing can prepare you for the death of your child. Nothing.

For months I just wanted to stay in bed and pull the covers up over my head. I couldn’t do that, though. I had a four-year-old in the bathroom needing help to wipe her bottom, and a teenager who totally shut down in the aftermath of his mother’s death. My elderly father needed me to help him put his shoes on. Still recovering from my own cancer treatment, I had to get out of bed and take care of business. Many times, I got those kids off to school and climbed back in bed until it was time for them to come home. I cooked dinner and shopped for groceries and read bedtime stories. Thank God I had those kids. They gave me a reason to go on living when I truly wanted to die. And thank God for my husband, who was there for all of us in so very many ways.

Some friends of Erin's gifted her with a trip to Florida for her, me, and the children. Due to repeated hospitalizations, Erin was not able to take that trip. The lovely woman who planned the vacation made some changes so that my husband was able to go in Erin's place. Six weeks after Erin died we boarded a plane, and despite our overwhelming sadness, we enjoyed a much-needed break from the reality of life at home. We were treated to two days at Disneyworld, including accommodations at Wilderness Lodge. Looking back, I can see what a blessing this was in helping us to prove to ourselves and our grandchildren that life still held the promise of happiness, even with the shadow of loss so palpable. 

We attended grief therapy at Ele’s Place in Ann Arbor. They offer programs for children of all ages and for their caregivers. My husband and I attended the child loss support group. I can’t say enough about the wonderful people who volunteer their time to shepherd the newly bereaved through the pain of those first weeks and months. We met other parents who lost a child, and have remained friends with many of them. The children took part in activities to help them preserve whatever memories that they had, especially important for the littlest ones. We learned how to live without Erin. It’s been hard and painful and messy. We have had to build a new kind of family without her.

I finished my five years of estrogen suppression therapy and have been vigilant about breast exams and mammograms. I feel a certain level of anxiety every time I am scheduled to have another one, though they have all been clear. No more cancer for me, so far. My hair grew back, though I loved the ease of no hair so much that I keep it short and spiky. 

I have experienced some mild neuropathy in my fingers, hardly noticeable most of the time. I also had mild Lymphedema in my right arm, but it resolved after wearing a compression sleeve for a few months. All in all, I have suffered no long term physical effects from the cancer treatment. The emotional fallout is another story. I cannot separate what is due to my cancer and what is a result of all we went through with Erin, it’s all an ugly mess.

I often wonder if I would go through chemo treatment again if it became necessary. It was brutal, and I’ll never know if I could have lived without it. I have learned a great deal about myself and about life as a result of cancer - mine and Erin’s. Nothing really scares me anymore. I’ve already suffered the worst thing that life can throw at you. Yes, I can be hurt again, but it will never be worse than what I’ve already been through. 

For years I could not imagine feeling joy again, but eventually I was able to. The undercurrent of grief is always there, just beneath the surface, erupting when I least expect it. We are not meant to reside in the dark for too long, the sunlight reaches in and pulls us out of the depths without us even being aware that it is happening. It’s been ten years since Erin died. My grandchildren are growing into fine young people. That four-year-old is about to start high school. My grandson is a grown man, very sensitive and loving.

Nine years ago, we sold the farm and moved back into town, making life easier for all of us. My dream of finishing the restoration on that house was passed on to another family. I have indeed become more skilled at knitting, and I just finished a novel. Not the one I was working on ten years ago, that one is still in progress. We have been blessed with two more granddaughters who bring us tremendous joy, as do all of our children and grandchildren. My father died at home in 2018 with me by his side. As painful as it is to lose someone you love, it is a gift to be able to hold their hand as they leave this world. I was able to do that with my grandmother, my uncle, my daughter and my father. I sincerely hope that when my time comes there is a warm and loving hand holding mine.

So Now What?

My beautiful Erin

So I've finished chemo and radiation. Recovered from the exhaustion and horrible burns and my hair has nicely grown back. I had my first post treatment mammogram and it was all clear. Damn, it had better be after everything they threw at me! I started on estrogen suppression therapy which will continue for at least five years. I am a cancer survivor. Now what?

Cancer  changed me in so many ways. I find myself talking to people in a different way than I did in my pre-cancerous life. I smile at strangers. I listen more carefully. I notice things more acutely. I have let go of things that distract me from what is most important to me. I have narrowed my focus. I set three goals for myself - to finish restoring my house, finish my novel, and become a better knitter. All attainable, I think. I am going on with my life cancer free, and am going to assume that it will not return.

But, my daughter does not have that luxury.

A week ago we called 911 when Erin coughed up blood and could not catch her breath. When EMS arrived her oxygenation level was at 45%. In the emergency room Erin was asked if she wanted to be put on a ventilator if necessary. It became necessary and in the hope that whatever was going on could be resolved she consented to the ventilator. She was transferred to the critical care unit. She had probable bleeding in her right lung, possible infection and the sarcoma had metastasized to her abdomen. On Monday we had a very difficult conversation with one of the doctors, making some difficult decisions. End of life decisions. Decisions that you never want to see your child have to make.

Erin has been so incredibly resilient through her diagnosis and treatments. She was worn out, and the end was near. She said she wanted to be able to go home with hospice care. She did not want her four year old to remember her with tubes running everywhere. If she could not get off the ventilator she would not be able to go home. She let us know that if that was the case she wanted the doctors to keep her comfortable and let nature take it's course. On Wednesday morning it was obvious that she would not be going home. Erin wrote on her sister's iPad "I'm done."

We brought her children in to see her. Erin was that strong, loving mom right to the end. She wrote "I will always be with you" "You can always talk to me" "It's okay." She signed "I love you." When I asked her if she was ready she nodded her head. The nurse began to sedate her. The ventilator settings were slowly lowered until she was not being supported in her breathing. She rested peacefully all afternoon. When her brother arrived from the airport she opened her eyes, looked at him and signed "I love you." Her last words. I held her hand as she took her last breath near midnight.

My heart is broken, battered, and filled with love for her and all of those who continue to support us. I wonder if I will be able to adequately help her children to deal with this. I can't imagine my life with out her yet I am forced to imagine it.

So I have survived my own cancer, but how do I survive hers?

I Get By With a Little Help From My Friends

They cooked, they cleaned, they cared for children and drove them to and from school. They sent cards and called and hugged us through the worst winter of our lives. I can't say enough about the healing power of friendship when you are teetering on the edge of the abyss. Nothing says love like someone coming and cleaning your toilet.

Before I began treatment a group of women who I went to school with took me to dinner at a local restaurant. I arrived to find the table decorated for a pink princess party. We had crowns and cake pops with pink ribbons on them. Most of these gals had not been close friends in school, but we had reconnected by planning our class reunions over the last few years, and they showed up for me when I needed a boost.

Another dear friend met me for a retreat in the dead of winter and helped me to sort through some doubts that I had about how to proceed with treatment. Friends came and cleaned my house, brought casseroles and soup and cakes. I have a stack of cards six inches high that arrived in the mail on an almost daily basis, cheerful reminders of the love that I am so blessed to have in my life. Friends called to check on me just when I needed a lifeline the most and took me to lunch when I could drag myself out of the house. Complete strangers showed up at our door with gift cards and coupons because they heard about our plight through the amazing power of the internet. Through the months of chemotherapy, the hospitalizations and radiation treatments, we were continually lifted up by the kindness of others.

I learned that people truly want to help out in a crisis. When someone says "What can I do?" they usually really mean it, and are happy to have you give them a task. I learned to say "Yes, I do need help." I learned that it is a gift to others to allow them to make any small difference in a horrible situation.

One morning I was leaving the house and looked around at my family. My husband had hurt his back and he and my dad were both hobbling around with a cane. My daughter was on the couch recovering from her latest round of chemotherapy, and I was preparing for my next treatment. As I drove to town I was feeling sorry that my grandchildren were growing up in a damned nursing home. Then I went to a meeting and listened to someone talking about the chaos of growing up with alcoholism, and I realized how blessed my grandchildren are to be growing up in a home where ketchup bottles and cruelty are not flying across the dinner table. They live in a home where we are taking care of one another in the midst of our suffering. And most importantly they are experiencing the wonderful gift of community. They have witnessed the love and caring from others that many children do not have the opportunity to see.

We had a party this last weekend to try to thank all of those who have done so much for us. I was humbled by the shear number of people on the guest list. Only a fraction of the folks on that list were able to attend. I wonder every day what I have done to deserve such an outpouring of love from so many, and how I can ever repay them. I hope like hell that none of them ever need the kind of help that we have required, but you can bet if they do I will be there cleaning their toilets.

Survivor

My beautiful daughter Erin
Cancer Fighter Extraordinaire

My daughter and I attended Relay for life yesterday, an American Cancer Society event. A friend and her team were walking in memory of her husband who recently died from lymphoma. "Team Robert - Crashing for a Cure" was the name of their team. They had a race car theme with checkered flags, a pit stop area, bounce house and games for the kids. A "survivor lap" begins the relay. Cancer survivors lead the first lap around the track. As my daughter and I started walking, with my granddaughter between us holding our hands and my grandson walking along with us, I started to cry. I cried the whole way around that track. Not just a few tears silently running down my cheeks, either. I was practically sobbing. I thought about those who have not survived, and those who may not survive the bastard disease. And I thought about what it means to be a survivor.

There I was with one last radiation treatment to go before finishing my long ordeal. I have allowed myself to be carved up, poisoned and burned with the hope that I will live cancer free. I will now begin treatment for five years with a hormone suppressant drug that may cause more unpleasant side effects. I am assuming that I don't have cancer anymore, that the surgeries and chemotherapy and radiation have eliminated every last cancer cell in my body. There is no way to be sure, though. There is no scan or blood test to be taken, only the daily awareness of any changes or symptoms that might indicate that it has returned.

I have lost many loved ones to cancer. My daughter has cancer and will have for the rest of her life. I had cancer, and hopefully now I don't. My daughter does not like it when someone makes a statement such as "she lost her battle with cancer." Like that person wasn't smart enough or didn't fight hard enough or just plain gave up. I agree. Most of us do everything that we can to stay alive. We cross the street when the signal says "walk." We eat our vegetables. We take our medicine. Sooner or later no more can be done and death will take us all one way or another. So what exactly does it mean to be a cancer survivor?

I guess it is different for everyone. For me, just at the beginning of my survivorship, it means never taking one minute for granted. It means caring for my physical and emotional health in a whole new way. It means loving my family and friends more deeply. Cancer has changed me. I have no patience for petty bullshit. I have narrowed my focus from the multitude of things that I used to pursue. My priorities have changed.

Surviving means more than just being alive, more than taking whatever the medical professionals recommend even when you are nearly dead from the treatments. It means being true to yourself and living fully til the very last minute.

I am a survivor.

Radiation Treatments

I began radiation therapy several weeks ago. Before starting radiation I was tattooed and fitted for a form that I lie in for each treatment. The tattoos are very small black dots, and are used to line me up properly before I am zapped with cancer causing radiation to cure my cancer. My daughter calls them my prison tats. Very appropriate since I feel like I am a prisoner to this ordeal. I was told that I would receive a total of 30 or 32 treatments. The doctor took his sweet time deciding on the actual number. The radiology tech said the doc likes to think about it. I hoped it did not depend on his mood on a given day. Like if he has a fight with his wife he might give me some extra radiation as a sideways kind of passive aggressive behavior. He finally decided on thirty treatments; twenty-five regular doses and then five "boosts" to the spots where the tumors were.

I arrive at the cancer center each morning, five days a week, for an 8:45 appointment. I undress from the waist up and put on a lovely hospital gown. Who designs those things, anyway? The ties make no sense at all, and these gowns are big enough for two or three of me. Evidently the powers-that-be want to be sure that I am not tempted to steal the things to wear as a fashion statement when I am out and about shopping or having a cup of tea with a friend. I am quickly called into the radiation room where I lay on a table with my head and arms in the mold that was made for me. My arms are above my head and the lovely gown is pulled down to expose my chest. Two or three techs position me correctly as we comment on the weather and the state of the world. The table and the radiation machine, technically called a linear accelerator, move up, down and around. There are lots of clicks and humming, and random lights going on and off. The whole process takes about fifteen minutes. I lay there studying the ceiling, which is decorated with a mural of some sort of flowering tree. Do they think that I will forget what I am going through and come to believe that I am actually laying under this tree gazing up at the sky? Someone has put some cutesy stickers on the machine in another attempt to distract me from the reality of the situation. I especially like the pink one that says "Fight Like a Girl." Anyway, I lay there trying to meditate and imagine the beams of cancer causing radiation attacking any residual cancer cells in my chest and lymph nodes. Every six days the gals do some x-rays along with the treatments. The x-rays help them make sure that everything is lining up properly. Before I know it we are finished and I return to the dressing room where I apply a steroid cream to my entire chest, throw the gown into a hamper and put my own clothes back on. I also have a large tube of aloe gel that I apply every night before bed. The cream and gel are to ease the burning of my skin that is caused by the treatment. This seemed to be working pretty well until last week. Now I have severe radiation burns, especially in the lymph node areas.

Radiation makes me tired. They tell me that the fatigue is a result of my body trying to heal the burns. It is nothing like the fatigue from chemotherapy, but I do take a nap every day, and I can't do a whole lot without sitting down to rest. I have six more treatments to go. I am so ready for this process to be over. I want my life back.

Oh, wait. This is my life.

Look Good, Feel Better

The American Cancer Society has a program called "Look Good Feel Better." My daughter signed us both up for one of their sessions at the cancer center in Brighton a few months ago, right before I was going to start chemotherapy. When we arrived we were greeted by a friendly woman and each given a zippered bag full of makeup that is donated by companies who I am sure hope to hook you on their products and thereby profit from your misfortune. My daughter said "Sorry mom, they are going to have you put makeup on." I have never been big on makeup. It just seems like too much trouble. There were several styles of head coverings and some donated wigs on the table as well.

The purpose of this program is to teach you how to look good after your hair, eyebrows and eyelashes have fallen out, your skin is blotchy and pale, and you pretty much look like death warmed over. There were three or four other women there. We introduced ourselves and talked about what kind of cancer we had and the treatments we were undergoing. The facilitator showed us how to apply concealer for those pesky dark circles that would plague us in months to come. We also learned how to draw semi realistic looking eyebrows, a real skill let me tell you. It did not take us long to start joking around and having fun. After we were finished with the makeup we were encouraged to try on some wigs. This is where it got real crazy. I put on one wig that made me kind of look like my grandmother. Then I tried one that made me look like Phyllis Diller. None of them were anything that I would wear in the privacy of my own home, let alone out in public. I'd go around bald first. My daughter found a lovely long blond wig. Who knew she could look so good as a blond?

I secretly thought that I would not need to use any of the tricks that I learned, but was glad that I had gone. I did go to the salon at St. Jo hospital in Ann Arbor, where they specialize in wig fittings and sell affordable wigs for women going through treatment. I bought a cute wig that looked similar to my own hair, just in case my hair actually did fall out.

Fast forward a couple of weeks. My hair did fall out. My eyebrows began to slowly disappear. My skin became blotchy and I developed dark circles under my eyes. By that time I really did not care very much about how I looked. I mostly wore a chemo cap of some sort and left the wig in the box it came in. I began to notice that people looked at me and treated me a little differently when I was out in public. One woman at Taco Bell gave me a coupon for a free meal that was meant for someone who had donated to a cause they were promoting. She said "I'm giving this to you just because I feel like it." A cashier at the local drug store gave me back a dollar in change when I should have gotten ninety cents. People offered to help me with my groceries. I began to wonder, is this how I want people to see me? Part of me said "Yes! Feel sorry for me! I have been horribly wronged by the karmic forces of the universe and I want everyone to take pity on me." Another part of me did not want to feel sorry for myself or to have others feel sorry for me.

One Sunday morning I was planning on going to a meeting and I decided to draw some eyebrows, cover up the dark circles and put my damned hair on. I did feel a little better. My friends commented on how good I looked. I went to the grocery store after the meeting and ran into an old friend of my daughters who I had not seen in a while. She did a double take when she saw me. She said "You look great! I hardly recognized you!" Kind of a backhanded compliment, don't  you think? She asked me how I was doing and my first instinct was to tell her all about the cancer and how crappy my life was. But I said "I'm good, how have you been?"

Sometimes I make an effort to spiff myself up a little before I go out, mostly I don't. When the weather started to get warm I realized that I was putting a hat on because I think that others are uncomfortable with my bald head. I decided that I will think about my own comfort. What you see is what you get. This is who I am today. I don't want pity. I want to live in the moment and for others to accept me as I stumble along on this bumpy detour my life has taken.

No More Chemo

I had three cycles of taxotere and cytoxan, with a chaser of neulasta. I was originally scheduled to have four cycles, but when it came time for the fourth one my doctor postponed it due to the fact that I was still so debilitated by the first three. He said that if I did not feel better in another week we would skip the last treatment and move onto radiation. I happily called a week later and let them know that I was not coming in for the last dose. I was still so weak and tired that I knew it was time to stop. My hemoglobin and protein levels were very low, and my white count was high. My hands and feet were numb and tingly. My fingernails changed color and were sore and brittle. The oncologist felt that I had received 85 - 90% of the benefit of chemotherapy, and I was willing to accept that it was enough.

Several people chastised me for my decision to forego that last treatment. Most of them have never had to go through chemotherapy, nor are they medical professionals, so their credibility was questionable. I had to trust myself to know what was right for me. I know that others go through much more in their fight against cancer. I watch my daughter return to the hospital every few weeks for more of the toxic chemicals that are extending her life and I am amazed at her ability to go on. I am sitting at the hospital with her now on day four of yet another round of chemo. Unless some miraculous cure is found she will spend the rest of her life fighting this disease. I know that at some point she may decide that she has had enough. I will not blame her.

It's been seven weeks since my last dose of chemotherapy and I am just beginning to feel like I have a little bit of energy. I can walk up and down the stairs without having to sit down immediately. I still take a nap every day, but I am able to fix a meal or do a load of laundry or pull few weeds. I can push a grocery cart around Meijer Thrifty Acres. My hair has started to grow. I used to take these things for granted, but no more.

I have an appointment to have my port removed and another appointment for a bone density test, which the doctor requires prior to prescribing hormone suppressing drugs. I am preparing to undergo several weeks of radiation treatments, which I understand will be very tiring, but I figure after chemo it will be a walk in the park. That is if I actually can walk in the park.

Chemo Brain

It's a real thing. The mental fog, confusion and memory loss that can accompany treatment for cancer. Patients have known it for years, but medical professionals have only recently studied the phenomenon in an attempt to explain it. It's my explanation for the fact that I have not written in over a month. I have thought about writing, but the ability to follow through and actually sit down at the computer and form an intelligent sentence has eluded me. Even now I am not sure if I am able to pull together the thoughts that have been swirling around in my brain.

In the last few weeks I have had conversations with family members that I do not recall. I struggle to remember what day it is. I have played word games in an attempt to keep my mind sharp, but I don't know how much it helps. I like to think of myself as a fairly intelligent person, and it is quite disconcerting to feel so slow and inept. A friend told me once that we cannot take pride in our looks or intelligence, as it is a result of having the blind luck to fall into the deep end of the gene pool. I am humbled by the way that chemotherapy has knocked me off my high horse.

My daughter has told me that she loses days at a time while having chemo, and I know for a fact that she has done things while on chemo that she has no recollection of. Like the time she did some online shopping while at the hospital receiving her infusions. When the things started to arrive in the mail she was pleasantly surprised, as she did not remember ordering much of it. I am hoping I have not rashly spent any money that I cannot account for.

I truly hope that I will regain my ability to form a coherent thought without a struggle. My snappy comebacks are a defense mechanism that has sustained me throughout my life, and I don't have a lot of other tools to work with. My energy level is at an all time low, and I want to believe that as my energy returns (as my doctor has assured me that it will even though I feel like I'll be a couch potato forever) that my mind will recover as well. If not, I apologize for whatever inane or unintelligible drivel I may have to say.

Stupid Cancer

My daughter has completed three cycles of chemotherapy, after two cycles of chemo that did absolutely nothing but make her incredibly sick. She had a scan a couple of weeks ago and the results were encouraging. The tumor in her lung has been considerably reduced in size. We are all thankful for a little bit of good news. She will have at least one more cycle of chemotherapy before another scan, which will hopefully show more reduction in the tumor.

While we waited for the results of the scan she attended the OMG Stupid Cancer Summit in Las Vegas. Stupidcancer.org is dedicated to serving the needs of young adults with cancer. Young people who are diagnosed with cancer face some unique issues - loss of fertility, having young children to care for while in treatment - among others. This is her second time attending. Last year she came home from the conference saying that it was a life changing experience. Being with several hundred other young people who are dealing with cancer was so good for her.  My daughter thinks that even though I have cancer I "don't really get it." I beg to differ.

I understand arrogance of youth; the terminal uniqueness that begins when you are a teenager. The feeling that nobody understands you, your problems are worse than those of anyone else, your parents are clueless. What the young don't get is that no matter how old you are, inside you are still that young adult with hopes and plans for your life. That you want to live a lot longer even when you are over forty. That emotions have no age limit. We all feel the same things when faced with the kind of adversity that cancer brings into your life.

I feel fear - that I my daughter will die and I will be faced with raising her children. I am afraid that I will die from this disease and then what will happen to them? I am afraid of the effects that these chemicals are having on me. I am afraid of more surgery and radiation and the effects of that on my already ravaged body.

I feel frustrated by the fact that my dreams for these later years of my life have been sidelined because of the things that have interfered with those plans. I am frustrated with having to care for a three year old and a teenage grandson who has a developing case of "I know it all and you are clueless Mamaw." I feel frustrated with my inability to do much more than take a nap.

I feel sadness that my sexuality has been forever altered by the way that I have been carved up and poisoned to the point that I am reluctant to have my husband touch or look at the results. I am sad that my grandchildren have to watch their mother and grandmother go through this. I am sad because I am older, and I don't have as much time to fully recover from this ordeal as I would have twenty years ago.

Most of all I am angry. I am filled with anger at the shitty karmic hand I have been dealt. At the drug companies that are profiting from my treatments. At the way we have poisoned our environment and contributed to the rise in cancers of all kinds. I mostly direct this anger at that ornery grandson and our dogs whose barking drives me to distraction.

I also feel hope and gratitude. Hope that these treatments will give us all more time together. Hope that I can overcome the anger and fear. Hope that love will win out in the end. Gratitude for all of the love and support and important life lessons that are revealed by a cancer diagnosis.

And for you youngsters who think that I don't get it you are so wrong. I get it. Cancer is stupid no matter how old you are.

Cancer Tips for Dummies

So I have a binder full of information regarding breast cancer, chemotherapy, radiation, and more. At each and every doctor visit they like to give you packets and folders full of advice and resources. Some of it is quite helpful, some redundant and some a little ridiculous. There are shiny pamphlets and flyers with stock photographs of cheerful looking doctors, nurses and patients telling you things that you might need to know while you are traveling the rocky road of cancer treatment. I am here to tell you that I am not so cheerful and I don't think that they should be misleading us with those images.

I have a whole section in my binder for test results, another for nutrition and yet another for drugs and side effects. As I was looking through the binder today I came across a page titled "Cancer Related Fatigue." The question, in big bold letters, "How Do I Know If I Am Fatigued?" jumped right off the page at me. Are you kidding me? I think if you even have to ask the question the answer must be no. There is a check list of indications that you might be suffering from fatigue.

1. Difficulty climbing stairs or walking short distances - check
2. Difficulty paying attention or concentrating - check
3. Shortness of breath after light activity - check
4. Difficulty performing simple tasks such as cooking, cleaning or taking a shower - check
5. Unable to do much during the day as usual - check
6. A desire to sleep more - check
7. Slower speech - check
8. Feeling like crying or depressed - check
9. Paleness or shakiness - check

I don't think it's rocket surgery figuring out that you are fatigued, unless maybe you have been laying on the couch for most of your life anyway. This might seem like just another day in the life. But I am here to tell you that I AM FATIGUED! I dragged myself to town yesterday for the first time in a week, just to buy some knitting needles at the local yarn shop. When I got home I slept for two hours. Today I wanted to go to the grocery store and get a few things. I made the mistake of going to Meijer Thrifty Acres. I barely made it through the store. I was sure that someone would notice the way that I was shuffling along, leaning into my cart with my wig slightly askew and call for assistance. No such luck. Then I got in the check out line, where the young man ringing up my groceries was far too chatty and seemed to expect me to respond to every single thing he said. I just couldn't do it. Then he was packing my bags so full that I could barely lift them into the cart. I had to ask him to please not do that. By the time I got to my car I wanted to cry and then take a nap right in the parking lot (see numbers 6 & 8).

Really, most of the information in the binder is helpful. I read through it before I started treatment, and now I refer back to it as needed. It is good to know that the things I am experiencing are a normal part of the process, and that there are things I can do to ease the symptoms. I wish they could just put me into a drug induced coma until I feel better. Is that too much to ask?

Chemotherapy - Round Two

So, here I sit at the cancer center having my second round of chemotherapy. I met with my oncologist first and discussed all of the side effects that I experienced after my last treatment. I told him about my 1 a.m pity party and my decision not to have any more poisons pumped into my body, and my subsequent rethinking of the issue. He is lowering my dose of neulasta, the drug that boosts my white cell production. This should happily reduce the pain that I had after my last dose.

I spent the last couple of days doing nice things for myself. I bought furniture for my new deck so that I can sit out in the sun while I am recuperating.  Yesterday I spent some time preparing to feel sick for the next week. Stocked up on Popsicles and juices. Did my laundry. Organized my arsenal of pain relievers, stool softeners, nausea meds, and hemp oil. Fluffed my pillows.

My daughter is here with me today. It's a change for her to be in the not so comfy chair while I am comfortably reclined. She calls me a part timer, since I only come for a few hours one day, while she has four long days for every cycle of her treatment. I am happy to be the junior partner on this cancer team.

I hope to get through the next week a little easier than the last time, since I know what to expect and can maybe deal with things a little better. I will refrain from partying in the middle of the night and posting to Facebook in a drug induced state of mind.

Bad Hair Day

I woke up to find my pillow covered with hair. Not cat or dog hair. My hair. I tentatively tugged at a few strands on my head and out they came with no resistance whatsoever. The doctors told me I would lose my hair, and I know several other women who have had the same chemo drugs as I am on who lost their hair. Still, it's a shock when it actually happens. It's like a  dream I had once where my teeth were all loose and falling out and all the next day I kept running my tongue around my mouth to make sure that my teeth were secure. Only this time I wasn't dreaming.

I had a wig ready, purchased at the salon at St. Joseph hospital in Ann Arbor. Very cute and sassy, my husband says. I also have amassed a small collection of hats, waiting for the day when I finally needed them. I stood in the bathroom for a long time pulling strand after strand of hair out and dropping it into the waste basket. I cried quite a bit. One more thing to grieve in this damned process.

So I took the hair clippers downstairs and told my husband he needed to shave my head. I did not want to go through days of watching it fall out in my dinner plate or washing down the drain while showering. My daughter, with her own bald head, took pictures while my husband buzzed me with the clippers. He was a bit nervous about it. I have cut his hair for years. He said he never thought I would let him cut mine. At one point I took the clippers from him and did a few swipes over my skull. My husband asked what I was doing. My daughter said I was taking control.

When the job was done I reluctantly ran my hand over my head. I did not like the feeling, like my husbands face when he hasn't shaved for a couple of days.  My husband looked into my eyes for a long moment and said "You are so beautiful." I cried some more.

Can't Get Me Out of My Bed

So, I spent several days hiding in my room. Literally hiding under the covers wishing that I could just will myself to die right there. Everything hurt, the exhaustion was unbelievable, the psychic pain unbearable. My mouth was sore, nothing tasted right, and my stomach was a mess. I am normally a power napper, fifteen minutes and I am ready to rock and roll for the rest of the day. No more. I have been sleeping for hours at a time during the day, several times a day. When not sleeping I still lay in bed watching episode after episode of The West Wing. This is an excellent show, by the way, if you have any interest at all in the workings of our government. Not a lot of personal drama, just a look at life on a daily basis in the White House. I like to fantasize about a life with little drama, just high powered decision making and a security detail following me everywhere.

On Thursday I felt marginally better, I decided that maybe actually getting out of my pajamas and putting some clothes on might make me feel human. It was mostly a symbolic gesture, not really achieving the desired effect. I did make a trip out to the grocery store with the help of some friends, which only made me want to go back to bed for the rest of the day. I stayed up for a while, but my bed continued to seductively call my name. I was powerless to resist.

At 1:00 a.m. Friday, after several hours flailing around in bed trying to get comfortable, I made the command decision that I would refuse any further chemotherapy. I would not allow myself to continue being poisoned. I was firm in my resolve and said so on a breast cancer support page that I joined a few months ago. I received many responses to my decision, ranging from "please reconsider" to "you can get through this" to "you whiny baby, you piss me off". I heard the experiences of women who have gone through dozens of cycles of chemotherapy, radiation, numerous surgeries. Women who have been so sick that they were hospitalized. Women who have had recurrence of cancer in spite of all treatments. By the cold light of day on Friday I was beginning to feel a little better, and slightly ashamed of myself for my middle of the night pity party.

Today I took my dad and grandkids to the library. I only needed one nap when I got home. Dinner tasted okay. I have a week and a half until my next treatment. I am going to eat the most nutritious food I can, hydrate myself really well and prepare for the aftermath. I will bathe myself in gratitude for all of the love and support that I receive daily. And try to stay out of the bedroom.

Chemotherapy - Round One

I had a difficult time falling asleep the night before. I was instructed to start taking Dexamethasone (a steroid) the day before, day of and day after chemo. This helps prevent allergic reactions, increase appetite and prevent nausea. It can also interfere with sleep. Combined with the anticipation of chemotherapy it was about 3:00 a.m. before I fell asleep.

We arrived at the cancer center at 9:30. I was promptly escorted to a roomy cubicle with a view of a koi pond and picnic area. I settled into the recliner with my large bag of books, knitting, and laptop. My husband got the not so comfy chair. There are some benefits to being the gal with cancer. A very kind nurse began to hook up all of the tubing to my port that was required for the treatment. I was given an injection of an anti-nausea drug that supposedly lasts for three days. Then had to wait 1/2 hour before starting the first chemo drug, Taxotere. The Taxotere infusion lasted for about an hour, then the nurse started the Cytoxan. Each new drug caused a slight bit of anxiety as I went on high alert for any side effects. I really never felt a thing.

I can't say enough about the wonderful staff at the cancer center at Woodland in Brighton. I spent many hours in the not so comfy chair when I was there with my uncle a few years ago. The nurses are so kind, patient and knowledgeable. One of the nurses remembered my uncle and was so sorry to see me sitting in that recliner. They explained everything as the day went on, brought me warm blankets and gave me advice about what I might expect in the next few days.

I was finished and we were headed out the door at 1:30. It all went much easier than I expected. I was exhausted, but I insisted that my husband stop by the local yarn shop so that I could partake in some retail therapy before going home. I bought seven skeins of lovely blue yarn to make a sweater for someone I know with beautiful blue eyes who takes such good care of me.

I took a nap when we got home, ate dinner, then stayed up and watched some t.v. I went to bed thinking, "that wasn't so bad after all." One of the nurses suggested a dose of ativan at bedtime even if I didn't need it for nausea as it would help me sleep. I slept and woke up feeling fairly well. I had to return to the cancer center in the afternoon to receive an injection of Neulasta, a very expensive drug that causes your white blood cell production to go into overdrive. The chemotherapy lowers your immune system causing your white blood cell count to drop, making you prone to infections. By the time we got home I was feeling very tired and needed a long nap.

This is where things started to feel shitty. Food began to take on a taste sort of like a bad tin can, a cat food can that has not been washed out. I felt tired in a way that I cannot fully explain. I just wanted to lay down and never get up. I went to bed early, and woke up feeling like I had been hit by the chemo truck. One of the effects of the Neulasta is extreme pain in your bones due to the fact that your bone marrow is suddenly put on overtime cranking out those white blood cells. I tried relieving the aching in my legs and hips with aceteminophen, but finally took a vicodin later in the day which helped considerably. I laid on the couch or in bed all day as the fatigue increased, and by dinnertime I could hardly sit up in my chair. I went to bed, took another vicodin and atrivan slept about five hours.

Today I feel like every ounce of energy I ever had has been sucked out of me. I took a shower and tried to sit up for a while, but I had to come back to bed. It was all I could do to climb the stairs. I hurt, I am exhausted, and I am very weepy. This is like the worst flu, plus a hangover, plus the week I spent walking around the French Quarter in New Orleans until I thought I could not walk one more step.

One cycle down, three more to go.

Port Placement

I keep thinking that we will get some positive news at some point, but the bad news keeps coming. After three surgeries we still do not have clear margins. A mastectomy seems to be in my future after all. I could have chosen a mastectomy at any point in this hellish process, but I just wanted to do the least invasive thing at every point along the way.

Regardless, I start chemotherapy tomorrow. Yesterday I had a port placed in my chest, just below my collar bone. I was given the option of having a local or general anesthetic for the procedure. I chose a local. This required me to lie under a sterile drape while a guy cut open my chest and implanted a port under my skin, with a catheter threaded down into a vein. This allows the chemotherapy drugs to be spread throughout the body quickly and efficiently, without having to start an i.v. for every treatment. I have to say that it was a little unsettling. I didn't feel any pain after being poked with a needle injecting the local anesthetic, but I could feel the pulling and prodding as he implanted the thing. I kept trying to recite the Serenity Prayer while looking out the small hole they left me under the drape, but the words got jumbled up as I lay there crying, thinking about the toxic chemicals that would be pumped into me through the damned device. The whole procedure took about an hour. This picture is the actual device in my chest. Looks kind of like a spearheaded tapeworm snaking it's way through me. When I am finished with treatment the device will be removed. I may get a tattoo that says "Fuck Cancer" in very lovely calligraphy to cover the scar.

I foolishly planned on going to Whole Foods and Trader Joe's after we were done at the hospital. I wanted to stock up on some easy vegan foods for the days when I feel like crap. I did not anticipate how discombobulated I would be after the procedure. We did go to Whole Foods and pick up a few things, but skipped Trader Joe's and came home. I took a nap, ate some dinner and laid on the couch for the rest of the evening. This thing hurts more than any of my surgeries did. I took acetaminophen a couple of times, and finally this morning took some of the vicodin that I was prescribed after my first surgery. It helped a little but I still feel like I got hit in the chest with a baseball bat.

I am not looking forward to tomorrow. I feel like I am on a runaway train which might derail at any moment. I want to jump off as we go around a curve, but that will surely end badly as well.

It's Only Hair

So I had another excision last Thursday. I haven't heard the results yet, but I sure am hoping that she got all of the pre-cancerous cells that were still lurking in the margins. Regardless, I will start chemotherapy next week. My husband and I attended a session of "chemo teaching" today at the cancer center in Brighton. A very kind Nurse Practitioner schooled us on all of the possible side effects of Taxotere and Cytoxan (the two chemo drugs I will be infused with), and Neulasta which I will be given the day after treatment to boost my immunity. I can look forward to fatigue, nausea, mouth sores, diarrhea, hair loss, rash, changes in skin color and darkening of my nails. These are the most common side effects. There are many others that are far worse. Really, how much worse can it get you say? Other cancers in years to come. Fatal infections. Kidney failure. Severe allergic reactions. Death. The only side effect that I was hoping for - weight loss - does not seem to be high on the list of common reactions.

I feel perfectly fine, and it seems insane to me to voluntarily submit to all of these things that are going to make me sicker than I have ever been in my life. I have tried every way I can think of to rearrange the information so that I don't in fact have to put myself through this, but it always comes back to this - I have to give myself every possible chance to prevent the cancer from returning.

Since I have been assured that my hair will fall out, I decided to have some fun with it beforehand. I made an appointment with my hairdresser (a big shout out to Kara Weaver at the Town Shop in Howell!) to cut, color, and frost it in pink. I intend to enjoy it until it begins to fall out, then I will shave it all off. I have amassed quite a collection of hats to tide me over until it grows back.

Torture

From the minute that I knew I was pregnant with each of my children I was on a mission to protect them.  I stopped smoking with my first pregnancy. I took prenatal vitamins in spite of the unpleasant constipating side effect. I ate my vegetables and drank gallons of milk. I insisted on unmedicated delivery because I worried about the effect of drugs on the baby.

Once those babies arrived I stepped up my efforts, child proofing the house before they could even hold their heads up. I breast fed them and made my own baby food, and would not keep plastic bags in the house for fear of suffocation. I used spray bottles of "Monster Spray" to monster proof their bedrooms, and amazingly it worked. I could go on and on.

No matter how hard we try, we cannot protect our children from all of the possible harm that can come to them. I often say that it is a wonder so many children live to adulthood considering all of the dangerous things that can befall them. Then, when they are teenagers the fact that we don't kill them with our own bare hands is a miracle in itself. Now I am forced to watch as my daughter battles for her life, and there is not one thing I can do to help her. I want to reach down inside my daughter's lung and rip out this monster with my bare hands. Where is the Monster Spray for sarcoma?

It is such torture to watch as she struggles to breathe while poisonous drugs are flowing into her veins in a desperate attempt to shrink the tumor one more time. The chemo drugs make her nauseous, the drugs they give for nausea make her disoriented. She can't eat and her lungs are filling up from all of the fluids that they give her to protect her kidneys from the poisons they are pumping into her. The diuretics they give her to get rid of the fluid have her running to the toilet so often that it is hard for her to sleep. My own oncologist told me today that he has had great success with the treatment that they are giving my daughter now. I am holding onto those words, to the belief that she is not going through this hell for nothing.

Retreating from the World

I crave solitude. It is only in the silence and aloneness that I can hear the things that my heart is trying to tell me. I often hear folks mention that they keep the t.v. on at home for “company”. I think that many times we are afraid be alone with ourselves, to sit in silence and allow the truth to reveal itself. So many decisions need to be made regarding my health. I hear what the doctors tell me and I read the literature, but what I most need is to be able to listen to my own inner voice. I need to give myself permission to make my own choices about treatment, to tune out the others and tune into myself.

I have taken myself on a retreat, to a little cottage in the woods. It is silent here, no television, no dogs barking or children screaming. I sit and watch the birds at the feeder, deer marching silently through the forest, squirrels scurrying about. The tree tops do a choreographed dance in the wind, like metronomes set at the most somber tempo. I fix simple meals for myself and slowly eat while listening for the still small voice that I know is my higher power speaking to me.

My surgeon's nurse called me earlier this week with the results of the MRI. It showed nothing significant, so the doctor wants to take one more swipe at getting clean margins. She scheduled surgery for March 6^th.  I really almost wish that she had seen something, making a mastectomy necessary. The reality is that she may still not get clean margins and have to do more surgery.  She talks about being motivated to save my breasts. I really do not give a damn. These girls have done their duty. They attracted several men, some I could have done without. They nourished and comforted my four babies. I am willing to let them go if need be. I think she is more motivated to save them than I am.

I got a call this morning. My daughter is in the emergency room. She began coughing up blood last night. They think that the tumor has grown into her airway. My immediate thought was that I need to leave here and go to the hospital.  I spoke with my daughter who convinced me that there is nothing I can do there. Her sister is with her and they will keep me informed.

I have gotten one bit of clarity in the silence here. I am not afraid of dying, we are all going to die sooner or later. What I am afraid of is not being fully present for myself and my family. I am afraid of not feeling every single thing, of trying to avoid the pain and in doing so robbing myself of the painful joys to be found in the sadness.

Miracles

When my daughter was first diagnosed with cancer I was consumed with fear. The statistics for long term survival were grim, and I could not fathom losing my child. After the first few days and weeks of shock, anger and denial I began to wake up each morning and consciously think "I expect a miracle." I knew we needed a miracle for her to stay with us. After a while I thought maybe I should be more specific. I mean really, we did not need a virgin birth or to feed a multitude with five loaves and two fish, or even a barrel of water miraculously turned to wine. But I just kept expecting a miracle, leaving the details to the universe.

As I have said before, I do not consider myself to be a Christian, and I always say that I am not religious, but that's not entirely true. I religiously attend a program of recovery and practice the tools of that program to the best of my ability. I do believe in miracles because I have witnessed them. They are not the big Walk on Water kind that you read about in the bible. They are the quiet miracles that happen every day if we are just able to recognize them, like witnessing the birth of a new baby, or seeing the seeds planted weeks ago sprout up through the soil, or watching someone who seemed beyond hope turn their life around.

In spite of the horror of cancer I have in fact seen many miracles. The fact that my daughter is still here today is the biggest miracle in my eyes. After that come the many ways that we have been shown how much goodness there is in the world. Friends, neighbors and complete strangers reach out their hands and hearts, hoping to relieve just a little bit of the burden and the burden is lessened. It is a miracle to me that I have been able to move beyond the paralyzing fear to a quiet acceptance of the reality of the situation.

After six weeks of agonizing chemotherapy the tumor in my daughter’s lung has continued to grow. Next week she will start receiving a different drug; one that she was given two years ago, in the hope that it will be effective again. I will continue to wake up each morning expecting a miracle. 

Breast MRI

So after the second surgery we still do not have clear margins on the left side. This is not a good thing. The surgeon basically said that there are minute cells (DCIS, or ductal carcinoma in situ, in cancer speak) that are lurking, waiting to invade surrounding tissue at some later date. She wants them all out of me one way or another. Today I had a breast MRI. I was injected with a nuclear contrast agent, then required to lay face down while Thelma and Louise were carefully arranged into boob sized holes in the table. I spent approximately thirty minutes in a tube while the machine did it's thing. It was extremely loud, even with the ear plugs provided. In spite of the noise I actually almost fell asleep at one point. The noises were kind of hypnotizing. The doctor is hoping that this will show the extent of the cancer cells that are still hanging around. If the scan lights up like a Christmas tree Louise is a goner. If nothing much shows up we will have one more try at getting clear margins. Either way, I will be having more surgery. This is all very disheartening.

I should have the results of the mri in a day or two.

Asking For Help

I think it starts when we are three or so, and we stubbornly say "I do it mysewf." We want to believe that we can take care of ourselves, our families, our finances without help from others. That's a very good practice when life is puttering along in an uneventful manner. It's admirable to be independent and self sufficient. However, it becomes a handicap when your ship is sinking and your lifeboat has a gaping hole in it and the bright orange flotation device you have strapped on springs a leak. There comes a time when it is okay to ask for help, to accept help that is offered. 

When people ask what they can do my tendency is to say "Oh, I don't know, there's really nothing. Just knowing you are here for me is huge." Meanwhile, we are eating crappy food because I don't have the time or energy for anything else. And the cobwebs and dog hair are taking over. And if the health department inspected our bathrooms we would probably be cited for some violation of standard cleanliness practices.

I have had to overcome my reluctance to accept help. It has required me to humble myself and admit that I cannot do it all. Imagine that - I cannot take care of my eighty-one year old handicapped father, my daughter going through chemotherapy treatments, her children, all of our animals, the house, the meals, the shopping, the cleaning - and undergo cancer treatment myself. My husband thinks that he is Superman and that he can take care of us all and I admire his determination, but I do not want him to burn out from the stress either.

A friend recently suggested that maybe if I ask for help I am admitting that it's all really happening. I suspect that there is some truth to that. Denial can be a wonderful defense mechanism, but it's not working very well for me at the moment. Reality just keeps hammering away at me.

It all comes down to control, and I have real control issues. Just ask anyone in my family. When I allow others to help I have to let go of control. Well, I am letting go. I am over thinking that I need to clean the house before someone comes to clean for me. I will not obsess over whether the meals we are given are made with the finest local, organic, non-gmo ingredients. I will trust that someone else can actually deliver a child to school as safely as I can.

I am reminded of a joke I heard long ago. A woman's house has flooded and she has moved to the second floor. Someone comes by in a rowboat and shouts into the window, "come on, I'll row you to safety." "No, says the woman, God will save me." The water comes higher and the woman moves to the roof. A helicopter comes and a rope ladder is thrown down. "Climb up!" says a voice from above. "No" she says, "God will save me." When the woman drowns and faces her maker she says "I believed that you would save me!" God says, "I sent a rowboat and a helicopter, what more did you want?"

My eyes and heart are open. I am on the lookout for rowboats and helicopters.

The Oncologist

I spent yesterday morning at The Healing Nest, having my first massage as a client. I never thought I would be going up the stairs of that beautiful place for anything other than a tour. It was always me sitting downstairs in the kitchen yakking with those crazy women while my daughter went up for treatments. As I lay on the massage table, with soothing music playing and warm loving hands rubbing away the tension, I was so very grateful. Grateful for the incredible beauty of these volunteers who give so much to ease the pain and worry of women going through treatment for cancer. After treatment we were served a beautiful lunch and shared our cancer stories.

In the afternoon my husband and I met with the oncologist that my surgeon recommended. I liked him immediately. He sat right down in front of us, looked me square in the eye and began to explain all of the details of my pathology report. He said that I have the best combination of results - estrogen/progesterone positive, HER2 (human epidermal growth factor receptor 2) negative. This means that hormone suppressing drugs can be used to prevent the cancer from recurring. The HER2 gene makes HER2 proteins. HER2 proteins are receptors on breast cells. Normally, HER2 receptors help control how a healthy breast cell grows, divides, and repairs itself. But in about 25% of breast cancers, the HER2 gene doesn't work correctly and makes too many copies of itself (known as HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression). This makes breast cells grow and divide in an uncontrolled way. This is not the case with my cancer, and that is a good thing. HER2 positive cancers are more likely to spread and/or recur.

The doctor recommended chemotherapy, followed by radiation five days a week for six or seven weeks and then hormone therapy which will continue for 5 - 10 years. He explained two different chemotherapy regimens that he feels would work for me. The first one is twelve weeks long, with an infusion every three weeks. The drugs used would be taxotere and cytoxan. I immediately ruled out the second regimen that uses drugs which can cause leukemia among other problems, and would be twenty weeks long with treatments every week. Typical side effects of each regimen are fatigue, increased risk of infection, nausea, neuropathy, sores in the mouth and hair loss. I really don't like to consider suffering from any of these maladies, but if it will increase my chances of survival I will do it.

I asked the doctor for some statistics regarding what benefit chemotherapy will offer me. He stated that with no chemotherapy my cancer is about 30% likely to recur. With chemotherapy it is only 22% likely to recur. So I can go through twelve weeks of poisoning myself to gain another 8% chance of no recurrence. If he had said 50%, even 25-30% I'd say it's a no brainer. I am just not sure that 8% is enough gain to justify all of the crappy things that go along with chemotherapy.

I need to completely heal from the surgery before starting chemotherapy, so I have some time to think about it and do some more research. He wants to see me again in four weeks. I left his office feeling empowered. I was armed with information that will allow me to make decisions about my treatment that are based in fact and not just fear, which is tough because either choice scares the crap out of me.

Can I Just Get Off This Ride???

So I spent the rest of yesterday wallowing in my own misery and despair. After crying a lot with my husband and calling my kids and closest friends I went to my granddaughters preschool open house and then to a meeting. There is something remarkable that happens when I sit down with a group of people and we talk about our fears. I am reminded that fear is an illusion, that I have all the tools I need to deal with whatever I am faced with if I just choose use them. I called my cousin and we sobbed and then laughed hysterically because it is all just too fucking ridiculous.

I saw the surgeon this morning. She removed some bandages and examined my incisions. Nothing remarkable there. Then she pulled out the pathology report and began to explain the results. During my surgery eight lymph nodes were removed and two tested positive for cancer cells. The margins of the tissue she removed from the left breast were not entirely free from cancer cells. Because of this she has scheduled me for a return to the operating room next Thursday. She will remove more tissue to ensure that there are no cancer cells remaining at the margins. Some more big words were thrown around, the gist of which were that my cancer is stage two, meaning that the tumor is 2 cm or smaller and it has spread from the initial tumor into 1-3 axillary lymph nodes.

Because cancer was found in two nodes, the recommendation for follow up chemotherapy is stronger. I have an appointment on Monday with a medical oncologist. The surgeon explained that he will discuss the different drugs that will best target this cancer. I have another appointment with a radiation oncologist the following week to discuss radiation treatments which will be done after the chemotherapy is concluded.

After my appointment we went to the local mega bookstore to find a book on dealing with breast cancer. Among the eighty seven million cookbooks, vampire chronicles and biographies of "reality" show stars, there was less than half a shelf of books on cancer. None of them were what I was looking for. I thought surely there must be another section that I had missed. I asked a sales clerk who told me that they don't have many requests for books on cancer so they aren't given much shelf space. I find that hard to believe when literally everyone I talk to has cancer or knows several people who do.

I am not sure why I feel a little more confident that I will have a good outcome after talking to the surgeon. This may not actually be the thing that is going to kill me, although after seeing what my daughter is going through with chemotherapy I may wish I am dead before it is over.

Biopsy Results

The waiting is shear torture. I am a pretty patient person, but at a certain point my ability to allow things to unfold in their own time without any urging from me comes to an end. Like when it's the day after I hoped to hear some news. The doctor told us that she usually knows the results of the biopsy by Tuesday. Well it is now Wednesday afternoon. A nurse called a while ago and to confirm my appointment for 8:00 tomorrow morning. I asked if the doctor had the results yet. She said that the report was on her desk. I asked if someone could let me know the results. The nurse said that she would ask the doctor to “sign off” on the report so that someone could let me know.

So I wait some more. I am trying to keep busy. Helping my grandson with his homework, which is a kind of torture in itself. Having a tea party with my granddaughter, her two babies and the dogs. There is some comic relief to be had with a three and a half year old in the house. At one point she put her baby doll in time out because she put too much chapstick on herself. I suspect the doll had some help, possibly from one of the dogs. I knit an entire chemo cap this morning, one of several that I hope donate to the cancer center. As I knit, knit, knit I think about the possibility that I will need this little warm cap and how nice it will look with my brown corduroy jacket.

Don’t they realize that I am desperate for some news? That I am on the verge of snapping the head off the next family member (a.k.a. grandchild) who gives me any shit? That at any given moment I might just stab myself with a knitting needle and end the misery? I am sure they do realize, and I know that I am not the only woman waiting for news. But I am the only woman in this house who is waiting, and it’s so very hard to take things one minute at a time. I have carried my phone with me all day, repeatedly checking to make sure that the volume is up and that I did not somehow miss a call. I tried to take a nap but could not fall asleep, so I am going to start knitting another hat. Maybe in a nice spring green.

Okay, so after three hours the nurse called back. Two lymph nodes positive for cancer and unclear margins on one side. Tomorrow we will talk about more surgery and appointments with radiation and medical oncology. Dammit all to hell.

Surgery

I arrived at the hospital early yesterday morning, feeling only slightly nervous. The first thing I was scheduled for was a needle localization. This is a pre-surgical procedure in which a wire is inserted through a hollow needle into the breast to localize the mass. I was taken to the mammography department, where the procedure was done while I once again had my boobs smashed in the giant vise. A mammography technician operated the machine and a doctor injected a local anesthetic and inserted the wire, which went through a small plastic clip. The wire protruded about two inches from this clip, and a very high tech dixie cup was placed over it and taped to my boob with scotch tape. This was your garden variety flat bottom cup. I thought they could at least have used the pointy ones so I could have that Madonna look going on under my hospital gown. The doctor explained that he was required to sign my boobs for some reason. I urged him to sign McDreamy, but he didn't go for it. He decorated me with his own initials and went on his way.

Next I was taken to nuclear medicine. NOT nuculer, Mr. Bush, nuclear. I was given more local anesthetic and injected with some sort of toxic nuclear stuff. This was done in order for the surgeon to perform a sentinel lymph node biopsy, to determine if the cancer has spread from the original site. I was also injected with some blue dye. The nuclear tracer substance and the blue dye move to the first lymph node (sentinel node). This lymph node is removed and biopsied after surgery. The blue dye also made my skin a sickening shade of blue. When I arrived home and put on my chartreuse green pajama top my face took on a cast similar to the Wicked Witch of the West. I am still peeing blue this morning.

After these procedures I was taken back to pre-op to await the surgery. The surgeon was running late and she had one other surgery before mine, so it was a couple of hours before I was taken in. My husband and I were joined by two old friends who kept me entertained and laughing while we waited. I was starving because I hadn't been able to eat after midnight. If I had known that it was going to be so late in the afternoon when they finally operated I would have taken a sandwich to bed and set my alarm for two a.m. and eaten it! Finally the surgeon came in and reiterated all of the things she was going to do, then she also signed my boobs. She put her name and a heart on them, slightly more artistic than the first guy.

A couple of nurses came in, shot some "I don't care medicine" into my i.v. and wheeled me into the operating room. I remember moving onto the surgical table and starting to look around the room. I was all prepared to tell them all that I watch Grey's Anatomy and I didn't want any of that bullshit going on while I was being operated on. They were to stick to the business at hand. I never got my chance because the next thing I knew I was starting to wake up in the recovery room. My husband was there and I said "Honey, those people hurt me." A nurse shot some good drug into my i.v. and pretty soon I didn't hurt so much. It took me a while to really wake up. I did not feel as bad as I had expected. I started drinking water and the nurse gave me some Lorna Doone cookies. They were the best cookies I have tasted in my entire life. Finally I got dressed and my husband drove me home.

I arrived home to two of my daughters waiting to take care of me, my kitchen counter laden with gifts of food, tea, chocolate and lots of other wonderful things. My sisters in law and neighbors really know how to brighten up a long and frightening day. I called and texted folks who were waiting to hear from me, ate some of the delicious food, watched a little t.v., took some more good drugs and went to bed.

Now I wait to hear the results of the lymph node biopsy.

Hope

I am having surgery in two days. The surgeon is going to invade my body in ways that I do not like to think about. I am trying to prepare myself mentally, spiritually and physically for what is to come. I have been drinking copious amounts of water so that I will be well hydrated. Napping every day has become a necessary ritual. Talking to my close friends about the stress I feel helps to ease the fear.

Someone told me once that it's easy to feel serene when you are in a closet all by yourself, but throw some people and situations into that closet and all hell breaks loose. I am not in a closet alone. There are people and animals and really crappy situations in my closet with me. All of which challenge me when I try to take care of myself. I'd really like to sneak out of this closet and go lay on a sandy beach somewhere and pretend that I am someone else. When I hear about identity theft on the news I think please, someone steal my identity and all that goes with it.

I was at a meeting recently where the topic of discussion was hope. Part of what I need to do to care for myself is to find a way to hang on to hope. I hope that the lymph nodes show no sign of cancer when biopsied. I hope that I am not in too much pain after surgery and that I will not be nauseous from the anesthetic. I have been told by others who have had breast surgery that it may be hard to sleep on my side or stomach. I hope I will be able to sleep. All of these small wishes pale in comparison to the things that I hope for my daughter. I hope the chemotherapy that is nearly killing her is actually working to prolong her life. I hope that she can tolerate the next cycle better than the current one. I hope that we can all work together to take care of her children during this godawful ordeal.

I know that there is always hope, even when things seem to be going horribly awry. Two and a half years ago the chances that my daughter would be here today were pretty slim according to statistics. I have survived many other trials. I have learned to trust the process which takes me through the pain and fear to the goodness on the other side. In spite of my past experience, as I look out my window at the frigid grayscale landscape it is difficult to feel hope. Then I remember that underneath the deep blanket of snow lies the promise of Spring. 

I Am Not As Strong As You Think I Am

I hear this over and over - "You are so strong, you will get through this." Or some other words to that effect. And I wonder, what exactly does that mean? What is it about me that makes people think that I am so strong? Is it because I am still walking and talking after every other thing I have been through, or because I get out of bed every day and take a shower and comb my hair? Does the fact that I have not lain down in the back forty and let myself slowly freeze to death somehow convey to people that I am more able than the average human female to handle the crap that has befallen me? Or is it just because I am not drinking or drugging in a vain effort to ward off the despair?

Well, let me tell you, I am not as strong as you think I am. I am on the verge of tears most of the time. I wake up in the morning and lay there for quite a long time trying to think of a way that I can just stay there all day. I have a very difficult time following a casual conversation because it all just seems so pointless. It is only through sheer force of habit that I shower and brush my teeth. I feel like the walking wounded and wonder why no one has thought to find a gurney to lash me to. I do not feel strong. I feel vulnerable and afraid and overwhelmingly exhausted.

I learned a long time ago that feelings are not facts, so maybe it's true that my ability to go on in spite of how I am feeling is a sign of some strength. Maybe strength is somehow tied to flexibility, to the way that we bend with the force of the bitter winds that threaten to break us. Perhaps strength is just a word that we use because we can't stand to think that we or someone we love will fold under the pressures of life.

So I wonder, if I am strong, where does that strength come from? A friend gave me a card today with a bible verse written inside - I can do all things through Christ who strengthens me - Philippians 4:13. Though I do not consider myself a Christian, I do like that verse. I believe in a power greater than myself, a force for good in the universe. I have spent many years learning to trust in the power of good, the goodness in those who reach out to me when I am in need. I see and feel "God" in everyone around me, and it is by getting out of bed, by turning away from the loneliness that makes me believe that I am unable to carry on, by reaching out to others that I gain strength. A burden shared is a burden cut in half, and I am strengthened by opening myself to the loving goodness of others. When I sit for a cup of tea with a friend and talk about the mundane details of life I gain strength to deal with the not so mundane details of life. When I write about the things I am experiencing I allow some of the burden to fall away from me.
You know how they say that there is strength in numbers? Well, when I stand in a room full of people, holding hands and saying a closing prayer, or see the counter at the bottom of this page that tells me how many are reading my words and following my story, I feel the strength of each of you filling me up so that I can go on for another day.

Doin' Time at the U

I started this blog to chronicle my journey through breast cancer treatment. There is never just one story, though. My story is entwined with the stories of others, and in addition to having cancer, I am the caregiver for my daughter who has cancer. I wish more than anything that this was not the case, that I had the luxury of sitting back and allowing others to care for me while I wait for my surgery date. After my daughter was diagnosed I screamed to the heavens "let it be me, not her." I didn't mean in addition to her.

So today is the first day of the first cycle of a new chemotherapy treatment. I would say that we got up at the crack of dawn to come to University of Michigan hospital, but dawn was hours away. We arrived here at 7:30 a.m. on the coldest damned day in history to have her blood drawn and chemo port accessed. Then we waited an hour to see the doctor. Then we waited another hour to be called into the infusion area. We will be here until about 7:00 tonight. While she reclines in a comfy chair, I sit alongside in a not so comfy chair. We have books and snacks, I brought my knitting and laptop, she has her iPad and is watching Downton Abbey. I would like very much to take a nap but it is impossible in this not so comfy chair with no place to put my feet up.

She is taking part in a research study, which is part of the reason we have such a long day here. In addition to the chemotherapy drugs she will receive an infusion of antibodies or a placebo. There is a 67% chance she will receive the actual antibodies, but we will never know for sure unless she experiences adverse effects. I am hoping that she receives the good stuff and not some useless saline solution. I want her to have the benefit of any possible thing available. She feels that no matter what she is helping others who come after her. I admire that about her.

The good news today is that we have been assured that these chemotherapy drugs should not be as debilitating as the last kind. Two years ago she would spend three longs days here at the hospital, followed by a week and a half of laying on the couch feeling like she had the flu and a hangover all rolled into one awful living hell. Then in another ten days when she just started to feel human again another cycle started. Over and over and over for months. Six cycles in all. But, the tumor in her lung was reduced by about 50%, so it was worth it. Granted, she did not think so while she felt like the living dead. More than once she said the only reason that she was going through it was for her children. I can relate to that.

Her oncologist felt that she would expect to see the tumor start growing again within a year. Well, it's been two years. Two good years. Two years with her children, friends and family. Two years of learning what is really important in life. Two years of gratitude for each moment. For me it has been a time to let go of the overwhelming fear, to embrace hope. I have learned to look at reality head on and to appreciate every good thing in my life.

When we were told that the tumor had finally begun to grow again I was gripped once again with powerful sadness. But I was quickly able to find that deep level of acceptance that I have gained over the last few years, to face what is right in front of me. So here we are again, passing the time by joking about hair loss and deciding what to have for lunch from the hospital cafeteria. All of the petty worries fall away as we sit here with others who are fighting for their lives with courage and grace. I know what the statistics say about this disease that wants to take my daughter, but I will not live in the fear. I will live in the hope and joy of every day with her. I will continue to believe that she will respond positively to the chemotherapy. I wake up each morning expecting a miracle.